Awesome Video of a Sibling to a Boy With Down Syndrome

The Gift of Time

Time is the ultimate gift – For example, you could get what you think is the greatest gift for your birthday – but if you don't have any time to enjoy that gift, it means nothing.

 

My Step Siblings Step Dad (say that five times) passed away several years ago now of ALS.  His last couple years were heartbreaking -- watching a previously able bodied man rapidly lose control of his body.  Because of our unique family dynamics, I wasn't very close to Lee, but I watched from afar and saw how devastating it was to my brother and sister.  One of the things that I admired as he faced his fate was how thankful he was for what he called the "Gift of Time".  From the moment he was diagnosed, he was thankful that he was blessed with the time, albeit way too short – but time, nonetheless, to make peace and say his goodbyes.  The Gift of time... 

 

If you follow this blog, you've likely seen posts I've made that mention a wonderful family that we met during our first stay at Minneapolis Children's hospital with Gracie.  They, too brought their daughter across the country – doing all they could do to try and make her better, but at 8 months, unfortunately they lost her – Lylli still prays for their daughter in heaven every night at bedtime.  Not a day goes by where I don't think about them – Before our trip, I couldn't help but wonder if we would be facing the same thing – At this point, it looks like Gracie is going to make it – and I'll admit, I'm not even sure what to say to them.  I'm pretty sure if I were them, I'd resent me a little, but at the same time, our story is much different and I know they are happy for us.  Anyway – I still follow their blog and to get back to the theme of this post – As unfair and sad as it is that she did not live a long life here on Earth -- they will forever be thankful for the precious time that they did have with her.  The Gift of Time...   

 

We were told since Carrie was 12 weeks pregnant with Gracie that she wouldn't make it – even after she was born we were told she didn't have much time – Despite being told a countless number of times by many respected medical professionals that Gracie could not be fixed, we found a surgeon that fixed her – A couple days after her surgery, while meeting with the Cardiologist -- they told us that she was fixed, but we really didn't know what that meant – Carrie said something like "OK doctor – I've been reluctant, but excited to get the answer to this next question for a real long time.  Now that we are done with this surgery, what can you tell me about the length and quality of Gracie's life?"  The doctor looked at her and said "I see no reason why she won't live a long healthy life" – I'm pretty sure the doctors here didn't think she'd even make it this long.  The Gift of Time...

 

Whether you know how things will end, or lose someone you love more than anything way too early, or are given more time than you were previously given – You've got to agree that the Gift of Time really is an amazing gift – Bottom line is that the amount of time is not guaranteed for any of us, so make the most of the time you have, remember how precious it is, and when you look back on it  - learn from the bad times, but remember only the good.  

 

 

 

 

Mother's Day Photo Shoot

The same wonderful woman that took our photos at the hospital when Gracie was just days old (through the Now I Lay Me Down to Sleep foundation) came to our house on Mother's Day for another photo shoot before we headed to Boston.  We are so thankful for these priceless images and look forward to having family photo sessions with Brianna for many years to come.
 
b2 photography | 651.470.4342 | www.b2-photography.com

You'll Get!

I was so excited to see so many people at the benefit for Gracie – the night was full of so many moments that I will remember and be thankful for forever.  There was one moment that keeps coming to my mind over and over since that day.  A couple of my friends were high school sweethearts – Pat and Shannon managed the long-distance college years, were married, and are the proud parents of two amazing boys.  Their oldest son, Cole, has autism.  I’ll admit that we haven’t exactly stayed in touch throughout the years – heck I probably only see them once every couple years.  But I have always liked and respected them both very much and in the age of social media (facebook, blogs, etc) I’ve been able to see a little into their lives.  One thing that is very obvious is that they handle being parents of a child with a disability with a lot of class (I might add – their youngest son is also a great example of how to be the sibling of someone with a disability) – I hope to be able to do the same (although I often feel like a duck these days – appearing to be moving smoothly, but kicking and flailing franticly under the surface) –  I know Ds and Autism cannot be lumped into the same group for many reasons and I feel sort of weird doing it because Gracie is Gracie as Cole is Cole and I already feel protective when someone sees Gracie as that Down Syndrome kid as I’m sure they feel when their son is seen as that autistic kid – they are both kids first who happen to also have disabilities – but I’m speaking about similarities in the fact that we will need to consider things like being an advocate, working on socialization and inclusion,  etc. – things that families with typical children don’t need to consider as much --   Anyway – as they were leaving – I thanked them for coming and also thanked them for being an example that I hope to follow.  As they walked away, Pat turned back to me with a very emotional look and shook my hand  – he looked at me in the eyes and repeated to me a few times “You’ll Get”  -- what he was saying was that there will be people that say oh – I couldn’t do it, etc and you’ll have moments where you’ll wonder if you can – the truth is yes there are some bad/frustrating/challenging things that come along with being the family that includes a child with a disability – but he was assuring me with those two words that I will get more good out of it than I ever could have imagined.  “You’ll Get” – I like it -- thank you Pat     

The Surgeon that Fixed Gracie's Heart

Haavud Medical School

Relaxing after checking into our new home away from home

Flight to Boston

Waiting to board in MSP

It's been awhile

What an amazing couple of weeks we've had – I know that I should've been updating this blog, but things have been pretty hectic and my wife has done a great job keeping folks updated on Gracie's caringbridge site (http://www.caringbridge.org/visit/graciedelaney).  On Saturday, May 7th, friends and family threw an unbelievable benefit for Gracie – Hundreds of people visited throughout the day and night.  There were so many wonderful aspects to this event – There was something for everybody -- young and old – It was so nice to see many old friends and family, new friends, and even many that we didn't even know – All brought together to support our little girl - most of these people have not yet even been able to meet her yet due to the fact that we've had to keep her away from others to avoid infection as she got stronger in preparation for our trip to Boston.  We were completely blown away by the whole thing, are beyond thankful, and promise to pay it forward.  Being reminded of our giant network of support just days before our trip has helped us so much in this scary time. 

Sunday and Monday were spent preparing for our trip and spending some quality time with Lylli – We woke up very early Tuesday morning and completely filled our car with all of the things we needed to drag with us to Boston – Besides getting all of the items checked and onto the plane – the experience wasn't too bad – we were happy to have the oxygen condenser with us because about 15 minutes into the flight, Gracie's O2 saturations (sats) dropped into the mid 60's, but with a tiny bump of oxygen, she was right where she needed to be.  She fussed a few times, but with the help of the pacifier and some pats on the back, she was relatively easy to keep content.  Once there, we managed to round up all of our gear – A friend of mine knew a guy that knew a guy and arranged to have a beautiful Cadillac Escalade there to pick us up and bring us to the place we were staying.  After settling into our new home away from home for a bit, we put Gracie in the stroller and walked around in an attempt to explore the area.  We found a Trader Joe's down the road and picked up a couple things for breakfast the next morning and some of those dark chocolate caramels that they sell there that are without out a doubt sold under the table to Trader Joe's by the devil himself – Man are they good!!!!!  What a beautiful place – Boston Children's is affiliated with Harvard medical school – The whole area is beautiful.  We are staying in a beautiful old home in an area similar to the large old homes surrounding the lakes in the uptown Minneapolis area.  We are staying at the Yawkey Family Inn – an old Victorian mansion, turned frat house, turned reasonably priced housing for families with sick children – it is a beautiful less than mile walk from the hospital.  We were definitely spoiled at the RMH in Minneapolis, but this place is also very nice.  I'll stop there for now and continue my recap in a later blog... Stay Tuned!!

Gracie's Benefit Flyer

This has turned into a huge event -- we are so humbled by our network of support going into our trip to Boston - we were pretty uncomfortable with the idea at first but after several convincing conversations have agreed to go along with it -- Everyday we hear about something new - it sounds like its going to be Amazing!!

hmm - let me check in the back to see if we have anything in your size

Our photographer says it’s a rare occasion that she gets to take a second set of pictures of the families that she took pictures of through the Now I Lay Me Down to Sleep foundation.  Next weekend is the big day of our family photo shoot  – this time we won’t be stuck in the corner of Gracie’s NICU room trying to look happy while our newborn daughter is on the ventilator. Hopefully – the weather will cooperate and we’ll be able to be outside somewhere.  Because of our upcoming photo session, I was told that I needed to go to the store and find myself a shirt to wear in our family photos.  I think, “nothing too pimpish” were my wife’s exact words.  Now those that know me know that I’m definitely no mack daddy and my existing body has seriously affected my pride when it comes to my appearance.  I think dressing grubby is a defense mechanism – because when I try to look my best, I am usually very disappointed these days.  So I went to the Men’s Warehouse – thinking that I’d pick-up a size 20 neck 36/37 dress shirt in a light color to go with the one pair of jeans that fit me.  As usually happens in stores like that, I was surrounded by the overdressed sharks who wouldn’t leave me alone – they really should have a class for these guys that teaches them how to read their customers – I would most likely spend more money if these guys didn’t bug me the whole time – because of this I make a point to get in and out as fast as I can instead so these leaches will just leave me the heck alone (Don’t even get me started about car dealerships or Slumberland).  Anyway – the guy helping me convinced me that the shirts I was looking at were to be worn only with a tie (despite the fact that I wore one sans tie in our last photo) and steered me in the more casual button up shirts – I did see a few shirts that I liked – I’ve got this uncomfortable prednisone bloat going on (which makes it even worse than my normal uncomfortable fat guy bloat) – the salesman assured me this XXL shirt ran big and it would fit me great, but I figured I better try it on to be safe.  I grabbed the same shirt in a couple different color/patterns and went into the dressing room – tried it on and looked like 10 lbs of you know what in a 5 lb bag – that’s right – the shirt he assured me would be roomy enough for me fit me like a glove – unfortunately it was a doctors glove.  I was so absolutely mortified that I walked out of the dressing room and told him I’ll take this one -- bought one of them anyway and now it sits in the back of my closet – I guess we’ll call it the first of my goal shirts.